Management of Side Effects -the new page

[JanNelson]

My spouse and I have both had serious side effects. But he was on several statins over the 12 years since his major heart attacks. Name the side effect and it seems he has it. Memory loss, pain, inability to shower and scrub his back as can't raise arms high enough, weakness, inability to sleep as movement at night causes so much pain he awakens, etc.

So having just found the site last week, I have kicked up his CoQ10 to two 120 mg per day. But the new Management page says it can go as high as 1500mg per day in increments, so we will try that.

I intend to order sellenium, as the page mentions the need for it, but no clue on how much to take. Does anyone know what is safe or necessary?

Lastly, for temporary and immediate relief from morning muscle stiffness and pain, we have discovered a level teaspoon of 100% pure MSM powder in the morning coffee or juice gives relief within five minutes. Enough so he can take that shower!

And laugh all you want, we buy the MSN for horses at the feed store , made in USA and 100 percent pure.

[cjbrooksjc]

Jan: By all means, raise the CoQ10 to the highest level tolerated. You can lower it later as your health improves; it won't hurt you. A CoQ10 supplier recommended to me by my Dr. is: Jarrow QH absorb. It comes in 100mg liquicaps and is available on *www.iherb.com. My Dr. recommended two caps with meals (3 X day). He also said take it easy on Vit E supplements if you are taking them; too much Vit E competes for resources with CoQ10. Also recommended is Vitamin D - a couple grams each week should do. Selenium - 200 mcg/day is a recommended dosage.

I'm not laughing at your MSM supplier. As a result of Statins I use udder balm on my hands and legs; also from the feed store. It works great.

Regards,

Brooks

[Biologist]

I read from a study over the weekend that only about 6% of CoQ10 taken gets absorbed. Now I do not know if that means from the stomach or into the cells, but the new stuff Brooks is talking about (which to my knowledge is new to the market) is designed to be over twice as available to the cells. For this reason, it can be considered to be half as expensive, or less, than the indicated sale price. Mine shipped out today per email notification. In the meantime, I am taking my existing supply at 1,500 or greater per day until the new arrives.

I do not know what MSM is. No big deal for me personally as I do not really have that kind of pain any more. I am interested in the glyconutrient thing also suggested today by Dr. Graveline but I do not really know where to start to avoid buying the wrong thing. Any ideas from any one?

Biologist

[JanNelson]

Thanks both of you for your help.

Next I need to know how much Aceytl L Carnitine daily and how much L-Carnitine daily, as he has both side effects....muscle pain and memory loss.

Jan

[carbuffmom]

Hi Biologist:

I have been taking glyconutrients for about 3 1/2 weeks. I use Mannatech products--Ambrotose. They are rather pricey. I use the Challenger Program. I can get you more info if you would like. Check out their website. I promised my family I would try them for at least six weeks. I can't say as I notice anything significant as yet. I am not as tired, and my right arm seems a tad better...could be all in my head. I intend to order another batch when this runs out and give it a good try, especially with Dr. Graveline giving it a thumbs up. I do take more than the suggested amounts on the advice of Gerry Ward here on the forum. I can give you the specifics, if you would like.

I am off to Henry Ford on Monday for the dreaded EMG and a clinic to meet more doctors, therapists, dieticians, and even a psychiatrist. I will report back with any new info.

Have a good day! DEB

[Biologist]

Thanks, Deb.

I will check into it and plan to do it.

Too covered up with work to respond much right now, but later on.

(Never mind, I'll go ahead and do a shorthand version of it now or may not get around to it in a timely manner -- I guess I could use a break from work anyway...)

If you have not seen this, you may want to check it out. Just something I bookmarked when I was doing some Google work on ALS recently and planned to post for you. May have little import, but here it is anyway:

*http://als.clinicahealth.com/comments.pl?sid=07/01/17/1412205

Here is something I read last night. It is the last paragraph and the last sentence that may be most pertinent in your case. It is what concerns me about your doctors / specialists not recognizing statins as the likely causative agent for your problems. Ignorance, "medical industrial complex politics" or both may be involved. I could be completely wrong here, but it seems to me the most likely answer is in their faces, and they appear to be denying it for one reason or another. I also saw a show on C-SPAN Book TV about Medical Practice over the weekend that got into the same type issues. Medical Institutions compete with each other and are loath to give up patients even if they suspect it may be best for the individual patient to go elsewhere. (They may however learn from the experience to help future patients -- and sometimes that is the rationale: for the greater good?). Regardless, if someone starts with the wrong assumptions about a problem, they only luck into the right answer, if they get it at all, ever. If you only have a hammer, everthing looks like a nail... It does not necessarily mean they are not good people. I could give examples where I have seen this very phenomenon where it made a huge difference. I will. Let's see how cryptic I can make the wording here: Years ago, a concerned floor nurse got someone I know out of the hospital where she worked and into major treatment center for burn patients where she privately and carefully explained to the parents the patient would likely die if left there -- but those doctors wanted to treat the patient there and though they could -- she knew better. The parents did make the move and the patient survived, but barely made it with the most specialized state of the art treatment available at the time. If left in the other place, there is little doubt the outcome would have been disaster.

Don't feel obligated to comment here. Just keep it in mind. I would want specialists who knew how to spell the term "Statin Induced" backwards and forwards, in multiple languages -- including Latin, in their sleep.

http://www.spacedoc.net/laparoscopic.html

I AM curious however, if they recommended CoQ10 supplementation, or if it only came up after you may have mentioned it? Or other supplementation like Acetyl-L- Carnitine?

Biologist

[cjbrooksjc]

Biologist: The ALS site is interesting and a little un-nerving. There are studies underway (UNC I think I read) to investigate a link between PARKINSONS!! and Statins among other things!! HOLY BUZZRFLEX!! Well, that's it for for me - for a while anyway. I'm going on a cruise w/ my wife next week (out the 8th and back the 28th) and I'm not going to read anything but statin-unrelated books for a while. I'm going to smoke cigars, dance, eat and drink stuff I shouldn't, and I think I'll try the ship's gym and sauna to see if I can finally begin to recoup physically. We are such complex bits of physiology, so interdependent; I only wish I could learn faster - there's just so much to know, but for the next few weeks I'm going to stop trying.

Regards,

Brooks

[poohhel]

Brooks Have fun on your cruise. Where are you going?

[Biologist]

Good for you, Brooks!

Drink a cold one (or two, or three) for me!

I have had to give that up for now, but maybe later...

It is the Parkinson-like stuff that I have concerns about (my weak and "tremorous" arm). NMD may be the right acronym for it all -- Neuro Muscular Disorders. It appears to me that there is a lot of overlap in the Statin-based versions of these afflictions including ALS. I think the difference MAY BE that statin people do not necessarily always progress to the same extent as "the real McCoy" of these diseases. I think the mechanism for actual damage may be largely the same, but the source is different. If the statins are the source, their elimination may mark the beginning of the end for the affliction after time. Maybe that is just wishful thinking, but maybe not.

Deb, I hope I did not sound too doom and gloom. Also, you are likely doing the exact right thing by going back to the same group at this time. You cannot do it all and you are committed to some degree with them at this point. Everyone will have different ideas and the treatments may or may not be mutually exclusive -- in fact, they may be the same regardless of a proper "source" determination for the affliction? And of couse, you may not have an NMD, or a lasting one -- of course, it SOUNDS like that protein test would be pretty definitive. One question I would ask is: "Have you, in your experience, ever seen anything like what I have get better?" That might tell you some things on its own.

In the last few days my symptoms have perhaps improved. Like you say, it may just be in my head, but I think it may be real -- I'll know over time. Only difference that I can think of off hand is cutting our Vitimin C and greatly increasing CoQ10 (+/-2,000 mg) for over a week. I will be keeping up that routine for a while.

I sure will be rooting for you!

Biologist

[Biologist]

Jan, didn't mean to ignore you. I take 1,500 mg of Acetyl-L-Carnitine per day in three dose (500 mg per dose) about an hour before eating (with 300 mg of Alpha Lipoic Acid each time). I take about 500 to 1,000 of L-Carnitine the same type way but often miss taking it at all. My problems are more nerve-related than muscle-related. If your husband's system does not tolerate that much carnitine, cut back to a lower amount or just start low and build up.

Good luck. Keep us posted.

Biologist

[cjbrooksjc]

Poohhel: We'll just bang around the Caribbean islands a while - three or four stops. Just being on the sea for a while will be nice.

Biologist: Yes. I will have one, two, or three in you name AND blame you for any rude behavior that may result. Though in reality I'll probably just fall asleep.

Brooks

[carbuffmom]

Brooks,

Have a wonderful trip! You deserve it. Have a toddy or two for me too.


Biologist:

Thanks for the info and the question to ask. I have everything written down. I will be better prepared this time. The dr. did ask me what supplements I used. I had a typed list for him and he went through each one with me. He did recommend the CoQ10. He said it does provide benefits. He also said that there is a trial going on where people are taking a dosage of 3000 mg. He also recommended the acetyl l carnitine and l carnitine. He also recommended Vitamin D. I take 800 mg. He said I could take more. He did not know about the ALA though. I told him that it's supposed to enhance the absorption of the ALC. He seemed very interested...

I will be very interested to see what happens this time. I am sure a lot will depend on the results of the EMG. I still have some fasciculations that were brought on by the first one. They seem to be worse after any type of exercise.

Is your problem specifically in only your left arm? It's good that it has not progessed.

I do so appreciate all of your research. It has been invaluable to us and has given me some measure of hope. Thank you.

My best, DEB

[Biologist]

Deb,

Your doctor's input/response on your supplement list sounded encouraging. The trial of 3,000 mg sounded interesting too. I may join up starting right now and bump mine up even more. Previously I wrote the following where there is a typo. My "our" should have read "out" and to clarify for others, I stopped my HIGH INTAKE of Vitamin C (+/-8,000 grams per day):

"Only difference that I can think of off hand
is cutting our Vitamin C and greatly increasing
CoQ10 (+/-2,000 mg) for over a week. I will
be keeping up that routine for a while."
--Biologist

"Is your problem specifically in only your left
arm? It's good that it has not progressed."
--Deb

My left arm issues developed over a period of about a week, then quit progressing very noticeably. I attribute it to several possibilities including taking high doses of cinnamon for several days immediately prior, which, as you likely know, turns out to be an HMG CoA reductase inhibitor (as it's mechanism for cholesterol and triglycerides reduction). I hope no one else makes this mistake. I also had a cold at the time and the virus might have had unusual access to stressed nerve/neural cells due to their previous (statin) stress and concomitant stress per the cinnamon at the time. (I think I used the term "concomitant" right.) Also the same could apply for all the Campbell's noodle soup I was eating while having the cold. (Yes, I realize this should elicit the "giggle factor" for some and I don't blame them). The soup has a lot of MSG which is harmless to most people, but maybe not to susceptible people such as those with stressed nerve cells -- it is an excitotoxin. Normally harmless, but maybe not in my case at that particular time -- it can cause cell death in rare instances. All just theories, but may be partly correct. (I am fairly convinced that mitochodrial damage is in the mix.) Other limbs are perhaps slightly "less stable" than they were, but this seems to fluctuate day by day, so if there is a "net gain" of pathology over time, it is hard to nail down. I have noticed a little of the same tremor issue in my right arm develop over a few months, but it could be a remnant of the original happening? When the arm(s) are at their worst, I tend to be mentally "tired" more and a little down -- depressed is too strong a word for it. It is this aspect and the association of one with the other that concerns me about potential Parkinson-type issues. Like you, exertion seems to make things more apparent. Yesterday was a very busy day, today I do not feel "as sound."

Thank your for sharing your experiences.

Keep your head up.

I think you are doing a good job of it from what I can tell.

Biologist

[Biologist]

I thought I would bring up a couple other things. You have mentioned Creatine at one point (I take creatine monohydrate largely because it is the cheapest and been around for years, but may or may not be the best). I had read somewhere (in a study, I believe) that it was recommended not just "as prescribed" for muscle performance, but also for general cellular ATP production assistance, and specifically in regards to NMD. In the end, it seems to me, it is the lack of cellular ATP that is the problem; in the muscles at least, this is supposed to be an end product of creatine supplementation. The mitochondria produce and export this molecule (ATP) known as the body's "energy currency." I wonder how much it is then able to perhaps exported from the cell itself to others in need? I will be looking for that answer.

I theorize exertion problems are due to the depletion of ATP. One of the things I will be researching if possible is how stable this molecule is and how far it can travel from the point of manufacturing. For instance, I do not know if ATP can be detected in the blood or is specifically transferred by the blood. I "tend to know" that it does not survive digestion, so that route is out. The reason I bring all this up is that it appears there is a systemic loss of ATP after exertion -- that for me, often shows up several hours after exertion -- or oddly, laying out in the sun for any length of time (maybe extra energy spent trying to stay cool? repairing celluar sun damage? etc.) It all appears to show up in my visual acuity too, and I suspect that is "visual interpretation" in the brain that's the problem rather than the eye not performing properly. Feeling down, arms less stable (with an associated slight "sensation" letting me know that they are weaker at the time) and visual fuzziness go hand in hand, plus the general lack of energy. Substandard mitochondria performance in ATP production might explain nearly all these symptoms. Did your doctor(s) comment on creatine?

BTW, this was to have been a busy day. I decided not to travel out-of-town due to feeling "statin effected/affected" today. No big deal, I'll do it Monday and do office work today.

If I do not get better overall over time, or get worse, I will just try to get use to the new me. I am learning everyday, it seems, how to anticipate and adapt. It could be that I will always just have a limited amount of energy -- which can be exceeded, but only at a cost a few hours later or the next day. On the flip side: The idea that exercise, as was mentioned in another thread, can increase the number of mitochondria in the cells is accurate as far as I understand -- feedback systems increase the number, over time, per demand -- at least in the muscles. The new ones may not have the production problems of the old ones. If there is a normal turn over, and if it is enhanced by exercise (which means walking in our case) that might be "the mechanism" for improvement over time, at least in the body, maybe not the brain? The mitochondria do not repair well from oxidative stress (free radicals) like the rest of the cell does. The machinery once damaged does not repair itself. But unless the DNA of the given mitochondria unit is also torn up, it should be able to replicate new mitochondria that are arguably perfect. That is what I am hoping for, and see a basis for, per my growing but limited knowledge of cellular biology. The extent of brain cell mitochondria replication -- and how to enhance it -- is another question. I will be looking to have find an answer. My own experience over time may be the only way I get answer.

bucho's experience has been inspiring. His year bench mark theory is giving me additional hope. Speaking of hope, there is more of a physical connection than we realize. It has been well shown that protein translations, for instance, are very effected by one's thoughts. Positive thinking has very positive physical, organic results -- particularly and firstly in the brain. If affects the wiring. It improves physical health and integrity of systems regardless of whether its based on a belief in science, in God, or Both...

OK, back to work...

Biologist

[Biologist]

Protein Transcriptions (& translations).

Biologist

[carbuffmom]

Hi Biologist:

Gosh, I can't believe how much research you have done and how intelligent you are. I am truly amazed. Perhaps you could come to Henry Ford with me? Ha! Ha!

I did speak with Dr. Newman about creatine. He said some of his patients can't get through the day without it and others seem not to be affected one way or the other. I haven't experimented with it as of yet. I always take one or two doses a day. I will ask about the recommended amount on Monday.

I, too, have cut down on the Vitamin C. The doctor said if you take too much, your body has to work harder to get rid of it. Enough said on that. We need our energy for other things.

I can't believe you are suffering from fuzzy vision also. Sometimes it drives me nuts! One day I can see forever and read without reading glasses and the next day the fuzziness is there. Can it be because we are tired? I haven't tried to keep track of it. I guess I should keep a diary of symptoms and when they occur. It's just nice to know that someone else has the same symptoms.

Have you tried NADH? It is Coenzyme 1. It's for cellular energy, mental clarity, cell regeneration, DNA repair, and boosts the immune system. It's just one pill in the morning. It takes about a month to work. It's worth a try. I've been using it for quite some time now. Check it out. It may be the boost you need.

You are certainly right about the positive thinking. Making positive thinking a priority is harder than one thinks. My daughter just gave me the book "The Secret" which is based on such thoughts. I will give it a read. Prayer also helps and thinking of happy times and funny things or listening to favorite music tends to make the stress go away for a bit.

Hopefully, we will be like bucho and it will just take time. Hang in there.
Have a good weekend.

Deb

[Biologist]

Thanks, Deb.

I'll check into the NADH, and no doubt do it.

Good luck with the upcoming poking and prodding...

Keep us posted.

And have a good weekend!

Biologist

[adec]

I agree carbuffmom. This place would be incomplete without the participation of good people like: Dr. Graveline, Fran, Biologist, Ray, Cjbrooks, Brian, Harley, Darrell, Xrn, ... and anyone else I forget at the moment. We need more informed, responsible, sensible, vigilant, and sentient souls like these committed to help continue to fight the good fight.

[carbuffmom]

Amen! We appreciate everyone! Kudos to all of you!

[bucho]

Fuzzy Vision!
I wonder if this should be a topic area unto itself! I was surprised to read of the various reports of fuzzy vision in this thread. I too developed this problem when the statin problems erupted, and still have it to some degree. As described by others, some days sharp vision, some days quite fuzzy. I never mentioned it (as well as a dozen other subordinate symtoms, to wit, pink eyes, lupus rash on face, ...) because it is merely irritating rather than debilitating. It was eclipsed by the debilitating symptoms.

But the fuzzy vision remains, although less severe. In the peak of the statin reaction my eyes would lose focus immediately upon any intense emotion, positive or negative (I excelled more at negative in those days). Moreover, just bending over or lifting weights would immediately blur my vision, especially in the right eye. Sometimes it would take 30 minutes to get good focusing back. It was almost as if the "camera man" was knocked out by intense activity and unable to perform his duties on the focus knob as I went about my normal activities. (When you lose it, you learn to appreciate all the automatic processing the body normally performs free-of-charge.) Sometimes it would take about 30 minutes after a burst of intensity for the camera-man to get back on the job.

RECOVERY UPDATE:
As I have reported, many symptoms are now gone at 1+ years off zocor. Even the minor ones, in fact, the whites of my eyes are white again, and I rarely get the lupus rash (which was constant and pronounced for a full year).

Well, not one to leave well-enough alone, I decided to test the limits with a very active weekend. And I have found that I can still get post-exertional exhaustion, although not as severe, which in turn sabotages my ability to sleep, which in turn slows the return to normal energy levels. But the good news is that it takes a lot of activity to trigger these consequences, and recovery is faster. (For all I know, I'm at a normal level for someone my age.) I can see that a day of windsurfing would be pretty debilitating the next day. Haven't tried that yet.

Biologist, if you find a good energy-restoring supplement, I am all ears. I'll just add it to my ever-growing supplement cabinet.